Palliative care service ‘best-kept secret’

Bonnie Bagnulo says when she tells people what she does for a living, “their response is generally like a doe in the headlights. They say ‘Oh,’ and seem kind of dumbfounded. But then they do start to ask questions, and it does start a conversation.”

Bagnulo is the program manager at Niagara-on-the-Lake Community Palliative Care Service. She is also a professional bereavement counsellor, with a degree in thanatology (the scientific study of death).

It might sound like grim work, but Bagnulo sees it otherwise. “I’ll just go to a home and people are overwhelmed and joyful that we’re here to go alongside them,” she says.

The service is a local resource to help anyone with a life-limiting or life-threatening illness, from diagnosis straight on through, “whether they return to health or not, whether they regress or not,” says Bagnulo. 

“I always say we’re the best kept secret.”

Life-limiting issues include dementia, stroke, cancer, heart disease and others. Bagnulo wants to make it clear that “palliative” in this case is not just end-of-life — “it’s also emotional support, and offering help with anticipatory grief — felt when a loved one has been diagnosed with a life-limiting or life-threatening illness,” she says.

“These situations can be a revolving door of services, with many people coming and going, and little chance for real connection — we like to remove that revolving door.”

The local resource offers a number of services, including volunteer home visits — or phone calls, for those who would rather not see or be seen by others. There are groups for people who want some understanding peer support, and two different lending libraries. The first is a collection of medical equipment, including walkers, wheelchairs, canes, shower benches, lift recliners, sheepskins and more. All of the equipment is available for free. 

The second library is a thorough selection of books, CDs and DVDs on a wide range of topics, and is available to anyone who might need some help navigating the medical or emotional issues involved in complex diagnoses.

Compassionate house, home or hospital visits are made by a squad, 30-strong, of trained volunteers, says Bagnulo. Hospice Palliative Care Ontario provides online and in-person training for visiting volunteers. “Ninety per cent of our volunteers are from NOTL,” says Bagnulo, adding they are always looking for more. She points out there is no more palliative care service in NOTL, since the hospital closed, so visiting palliative care has become that much more essential.

“We always need and welcome more volunteers. Anyone with a warm and caring heart is encouraged to take our training course,” she says. “The more lives we can touch, the more lives are enhanced.”

The service has decided another way to enhance the lives of people in NOTL is to offer education. This comes in the form of their library, and also through a series of workshops. It begins on May 16 with a session about advance care planning, led by a palliative pain and symptom management consultant. Upcoming session topics include caregiver relief (May 23); elder care Alzheimer’s; MAiD (Medical Assistance in Dying); and grief and bereavement, with a death doula. The workshops are free, and run from 1 p.m. to 3 p.m. in the auditorium at the NOTL community centre.

“We’ve partnered with the Niagara North Family Health Team for these sessions, which is a step in a very good direction as far as building partnerships,” Bagnulo says, adding the palliative care service will be moving with the team to their new facilities.

Bagnulo says her bereavement journey began in 2002, with the death of her brother. “I had a lot of death in the family,” she says. “I saw that people tend to fall apart just when they should be falling together.”

The mother of two now-adult children decided to do a deep dive into how to solve the pain for others in similar situations. She went from managing a jewelry shop to working in churches and a funeral home, and had a private business as a bereavement counsellor. “People are not wanting to think about death and mortality. Death is a taboo discussion,” she says, adding her goal is to change that. “We’re living at a time when people are kept alive as long as possible, despite their quality of life. Then they scoop up the body and take it away, hide it, don’t talk about it — hush hush.”

One of the services offered by the group is “death cafes,” where people can discuss all things death and dying in a comfortable, supportive group. “We also offer palliative massage, and a battery of other services we can refer to: hairdressers, Heart to Home meals, advanced care planning and more,” she says as she points to various manuals and catalogues. “We like to be thought of as a broad resource.”

The Niagara Falls native and resident says the service is the answer to the question, “I’m overwhelmed. Is there someone who can put me at ease in this moment of crisis?” 

“This is a good place to start with any life-limiting or life-threatening issue,” she says. “If it’s beyond our scope, we’ll guide them, and move along with them all the way through, at the very least as a sympathetic ear.”

Bagnulo was one of 153 people who applied for the job when stalwart leader Terry Mactaggart stepped down from her position last year. “I feel so blessed. This position uses so many of the skills and services I have developed in other careers,” says Bagnulo. She is happy to say she has Mactaggart “in my back pocket” whenever she needs an answer she can’t find herself, and says the business was “a well-oiled machine” when she stepped into the full-time, paid position.

The stress and weight of the job can occasionally be overwhelming, and Bagnulo says sometimes she can’t help but be angry at the “stupidity” of disease and death, particularly among the young. “Every one of my clients touches me. We have to have a healthy line of detachment, but every one of our clients touches us,” she says.

“One of the things I love about the job is that my house is 20 minutes from the office,” she says. “I have a great playlist, and I crank it in my car. I also love to walk and do yoga. I’m also blessed to be surrounded by a huge team of loving, caring beings — it’s like being with your soul family.”

The service currently has approximately 94 clients, says Bagnulo. “Some we have had for five or six years.”

It’s also serving three long-term care facilities with teams of volunteers who go in for one-on-one visits. “They go in to check up on people, ask them how they are, pop in for 15 minutes to an hour.”

Pertinent to NOTL’s demographic, another service provided is guidance through the maze of long-term care. “If there’s any way we can offer comfort and calm, we will,” says Bagnulo.

As Bagnulo says, “once you know the need, you’d like to help. Once you’ve had an experience without support and someone to help you sort out what’s going on around you, you want to get involved.”

If you’re feeling this, there are ways to do so beyond the compassionate care visits. “We always welcome help with light office work, fundraising, or contributions to the lending library,” says Bagnulo. “People are welcome to do their own fundraising efforts. We can negotiate how we can help with them,” she says, adding that Rev. William Roberts of St. Mark’s church conducted his own fundraising bike ride around town as part of the Healing Cycle Foundation.

“The funds go to sourcing more equipment, as well as providing education,” says Bagnulo. They also contribute to having volunteers trained, office administration costs, and building the library.

“No one is immune: death touches every single life,” says Bagnulo.